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Author
Topic: One Soul Too Many (Read 4917 times)

As I read the posts concerning the horrible state of HIV funding in the states, I am reminded of my years in Florida and my annual battle to retain my Ryan White services for medications. I wrote this blog entry in 2004 and while the names may change, the story remains the same; too much need and too few services. Unfortunately, amidst all of this, there remain people dedicated to the HIV community, who try to make the system work for us and all too often, they are the forgotten souls.

Therefore, as a tribute, to all the selfless workers, who have worked to keep me alive, I offer the following.

One Soul Too Many

I went to renew my eligibility for Ryan White services yesterday. It’s an annual pilgrimage for Florida residents and always serves to illustrate some new way to debase a human being. The rules and regulations change, sometimes monthly, yet are rarely publicized, so you are never sure of which hoops you will be jumping through to obtain your services. Suffice it to say, that I have never experienced a more inhospitable environment, than HIV service administration in the state of Florida. The only thing that makes this process tolerable is the people who administer the program. They might not be perfect, but they try to soften the indifference of the system and the impact of the interview process. They try to bring humanity to a very inhumane system.

While they may boast a tough veneer, most are very caring and I suspect the abrasiveness is more of a defense mechanism, to fend off the pain that they must witness almost daily. Many times they are experiencing the new rules with you, so you feel that at least you have a comrade as you negotiate this maze of paperwork. But still you cannot help but wonder: does this system really need to be this dehumanizing?

I always prepare myself, many times to the point of absurdity, for my inquisition. I have my photo identification, Social Security and Medicare card, proof of residency, proof of being positive (yes, really) and my latest lab results that include my CD4s and Viral Load. I also have a 6-month snapshot of my financial status, including bank statements, award letters and my 2003 tax return. So I pack up my ammunition and proceed to the Broward County Health Department. I am about to embark into the surreal world of entitlement services.

As I enter the Health Department, I feel like Yossarian, from Catch-22, entering the “Department of Redundancy Department”. I remembered my visit from last year and redundant was an understatement. I had been told that the requirements had been streamlined, but I remained skeptical because the rules of this game are always in flux. I proceed to sign in, and I am relegated to the chairs located in the hall of doom, to await my interview. I know to bring a book and so the next hour and one half passes fairly easily. I glance up occasionally to see my fellow clients. They represent every facet of living with HIV with the thread of commonality being that we each need these services to survive.

Finally, my name is called and I gather my ammo and enter the belly of the beast: the Eligibility Department. A caseworker leads me into the office, but there is no formal introduction between us, nothing to acknowledge that two human beings are actually going to interact. Civility appears to be an option here, as there is not any law that says civil servants have to be civil. The two women, who share this office, just seem numb and indifferent. Worse yet, is that here in the Eligibility Department, it seems that they are actually being penalized for occupying space. The Health Department has outgrown its old home, but these temporary quarters were offensive, even by governmental standards. I no longer wonder why they lack any expression, as two of them have been stuffed into and share a 10’ x 5’ room. I have had larger closets.

So amongst this splendor, the interview begins. I am asked for my documents and supporting information, which are quickly reviewed, and it is decided that I will remain in the Ryan White program, for prescription HIV drugs, for another year. But there seems to be a problem with my income and I might not qualify because it is too high. When they look at my private disability statement, they only consider the gross amount shown, which still includes the offset from the Social Security (SS) income that I receive, rather than the net amount, which reflects the real amount of my private disability income. Instead, they take the gross amount and add my SS income, thereby double counting my SS income. I ask why they are incorrectly adding up my income, only to be told that they always go on the gross amount. “But the gross amount, when added to my SS income is double counting”, I protest. I receive a look that tells me that I am barking at the moon and I cease any further inquiry. Their look also tells me that they know the system is broken, but they know how to work it so your services continue. It appears that accuracy is not as important as seeming to be in control of the process.

The caseworker completes my paperwork and proceeds to scan in each document that I provided, so they are part of my permanent record. She thanks me for my patience and hands me all my documents and instructs me to take them, next door, to room number 10. I do as I am instructed and in room 10, I find a pleasant and efficient clerk, who reviews all my documents and the application and then proceeds to copy every document that the previous caseworker had just scanned. She then takes all these copies, staples them together and tosses my packet onto one of the 5 piles on the floor. It seems the new rules require all these copies, to insure eligibility, but I cannot help but think, how much money is being wasted and for what? She returns my originals to me and as I exit the office, I swear I hear the Twilight Zone theme music playing…

So from beginning to end, this whole ordeal takes 3.0 hours. Not too bad on the awful scale and I don’t have to return, as many clients do. I know the rules and I come armed to the teeth with data. But what about the others who come to apply? They just seem to get chewed up and spit out, only to return another day and begin the process anew.

I’m all set for another year and I am grateful because the medications that this program provides me, keep me alive. I am very grateful, each month when I pick up that bag of drugs, because without Ryan White services, I would have no prescription drug coverage at all. I also greatly appreciate all the work done by the Health Department employees, even if their methods sometimes defy logic. I never forget that they don’t make the rules, but they get stuck enforcing them.

Unfortunately this story does not end here.

That’s because, during my interview, I got to see the human side of my caseworker and I was very depressed by what I witnessed. Initially I saw a woman who appeared to be dejected and seemingly uncaring, but as a result of funding and policy issues, was now a woman with her spirit broken and who had been demoralized. She told me that she used to work as an HIV caseworker in another state but had finally been forced to abandon her caseload there, all because of administrative policies. She had become a caseworker by choice and the fact that she was also HIV positive, made her work with Ryan White services seem a natural fit. She enjoyed her work and felt that she was making a difference. She was living with HIV and earning a living by helping others on the same journey.

But then something changed. It became less important which services or how they were administered and rather, the cost of those services were given paramount concern. Ways were developed to disenfranchise applicants and a system that was initially designed to deliver services, became a barrier to limit access to those very services. Where she once spent her days tailoring the Ryan White services to her clients, she was now obliged to find ways to limit their access to those services. Her profession had been bastardized, in the worst possible way, all in the pursuit to save a few dollars.

Having become totally disillusioned, she moved to Florida with the hopes of regaining her spirit and her purpose. She again became a Ryan White caseworker and said it was good during the first few years, but then the ominous signs returned. The accountants had again retaken the castle and the name of the game returned to limiting services. Funding was tight. All of those requirements that I mentioned earlier were morphing into a barrier to deny services and by default, had again become her mission and her job.

I initially thought that she was a woman who was dejected and uncaring, but what I left in that room was something beyond description, yet still inspiring. They had not only demoralized her, but they had dehumanized her by their rules and the environment in which they forced her to work. Yet, even with all that had been done to her, she maintained her humanity and compassion. Many times during our interview, we were interrupted and she would listen patiently, while some client was complaining excessively about how awful his day had been. When I joked that sometimes her job required great patience, she replied: “For some of these souls, we are the only ones that they have to talk to and I guess today is my day to listen.” Even while she labored under intolerable conditions, she still had compassion for her clients. She understood that many times it is the small things that matter, and in life, we each have our own role to play.

But as I was leaving the building, I saw her one last time and as I looked in her eyes, I saw that light of compassion falter, that flicker of caring fading and realized that the system had again, begun to extinguish her inner being. She was slowly being changed, her spirit continually eroded, and again she was required, for her own preservation, to erect barriers to the very clients that she once served, proudly and compassionately. Where she once had a career that nourished her, she now had a job that merely sustained her. Her profession was again being usurped, all in an attempt to save money by limiting services. Once again her compassionate lifeblood was being drained away.

The indifferent politics and administration of entitlement services is claiming yet another soul…

I have medicare, I've had it for the last 10 yrs. but I cannot even use it, even with medicare part d, I still wouldn't be able to afford any of my AVRs so that's why I'm on ADAP... Medicare for all isn't gonna helpeveryone.......

« Last Edit: March 30, 2011, 10:28:56 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Isn't that what Medicaid is for, if your under the FPL, you cannot simply just give medicare to everyone that's not covered, they are gonna have to buy there own Ins. if they can afford to or get on MedicaidI fail to see how that will work, however do understand that the system is broken in so many ways.......

« Last Edit: March 30, 2011, 10:51:55 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Why should some people get free healthcare while others have to pay, irrespective of need? Doesn't seem fair to me.

That's because it is not fair that only some people have health insurance. Health care is a human right and not some type of entitlement program. When you are in dire need of health services, you have no options on whether you should seek services, only a concern that services will be available to you. If everyone quit the bitching, thinking that somebody is getting something for free and instead concentrated on delivering the most effective services at the lowest cost possible. With Universal Health Care, you would not need the myriad agencies and the patchwork of programs that have cracks large enough to pilot the QEII through. The savings from dismantling the many overlapping programs, would most probably be enough to provide each American with world class health care.

The lack of Universal Health Care in America is not due to a lack of money. It is a lack of moral clarity by our elected leaders to do what is best for ALL AMERICANS.

Why should some people get free healthcare while others have to pay, irrespective of need? Doesn't seem fair to me.

People on Social Security pay according to there income level, if they make 100. 200 or more above FPL,then they pay a premium..... I pay a medicare premium, and they pay almost 100% of my ADAP, I'm not getting a FREE ride here, I also have co-pays for other meds, and doctor visits, if everyone was equal a lot of AIDS perks would be gone like our own clinics, counselors, assistance in Processing forms, ADAP ETC... so ur wish could end up biting you in the ass, be careful what u wish for

« Last Edit: March 30, 2011, 11:59:45 AM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'm stating facts, I've worked all of my life, and I have been on the system for the last 12 yrs. you want to turn this argument on me , but, you fail to understand how the system works, it go's by income levels, so, how in the hell can it ever be equal , I'm not the one arguing a fact, but you obviously aren't a part of the system, so you can't possibly even know how it is for a lot of us......

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'm stating facts, I've worked all of my life, and I have been on the system for the last 12 yrs. you want to turn this argument on me , but, you fail to understand how the system works, it go's by income levels, so, how in the hell can it ever be equal , I'm not the one arguing a fact, but you obviously aren't a part of the system, so you can't possibly even know how it is for a lot of us......

Dennis, I think the confusion here is that with Universal Health Care, there are no income levels that restrict your access to health care. Income levels could be used to determine what you pay for your health care directly and with incomes like ours, most probably you would pay relatively little out of your own pocket. Until you have experienced such a system, it's hard to conceptualize how it all works, because it is so different from what we have in the states. In Canada, income has no bearing on health care costs, as ours is financed by both a government and provincial sales tax that is solely consumption based. It excludes some basics, like food, but we pay a combined tax of about 12.5% on everything we buy that is not exempt. That is how we finance our health care.

Yeah, I know Joe, thanks for your post even @ the 200 to 300% FPL income level I'm currently at Universal Health Care wouldn't change much of anything for me I just find it odd that the poster wantsmedicare for all, but yet he's not even on it, to get it, you have to work untill you retire or go on disability and wait 2 yrs. to get it, he'll get it if he does either of these 2 things, that was my point in all of this Joe, but I'm glad you understand this, you use to live in the US

« Last Edit: March 30, 2011, 01:24:08 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Yeah, I know Joe, thanks for your post even @ the 200 to 300% FPL income level I'm currently at Universal Health Care wouldn't change much of anything for me I just find it odd that the poster wantsmedicare for all, but yet he's not even on it, to get it, you have to work untill you retire or go on disability and wait 2 yrs. to get it, he'll get it if he does either of these 2 things, that was my point in all of this Joe, but I'm glad you understand this, you use to live in the US

I don't know why you are trying to twist my words. But i think I have very clearly stated that I'm in favor of Universal Healthcare for everyone. Everyone. With a system similar to Medicare. Financed in a very similar manner to that described by Kilfoile.

Just because I'm not on Medicare/medicaid doesn't deny me the right to express an opinion on Universal healthcare, nor does your receipt of same make you any more qualified to determine what is the best form of healthcare coverage. Your attempt to undermine my right to comment just belies how weak your argument is.

If we had Universal healthcare Kilfoile would never have had to endure the aweful treatment described in the OP. In my view of how things shoud be, he would have qualified for healthcare automatically without having to jump through any hoops whatsoever. And that's the way it should be for all Americans.

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"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

Whatever truth: you cannot get medicare no matter how much you think you want it, if your still working, you'll have to wait like everyone else I deal in reality & facts not hope for change fantasy, do I want to see UHC? yes I do, so nobodies denying your right for anything on your opinion here, sorry you don't see it that way

« Last Edit: March 30, 2011, 02:44:53 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

I'm not entirely familiar with your story. How did you get into the Canadian system? Are you a US citizen?

I was born in Toronto and then adopted and grew up in Detroit. I moved to Florida and lived there for 12 years. We moved from the states in 2007 and since we are married in Canada, my hubby is covered and will become a citizen next month. Our combined monthly drug co-pays are around $150 each month. Other than the cost sharing, regarding drugs, there are no other costs, unless you want non-emergency services in a hurry and then you may have to pay something. Basic health care, drugs and emergency services are there for everyone, being a citizen or a legal resident is the only requirement for being covered.

I have many social workers and nurses in my family. Its very important that workers have a family around them that can listen and help social workers release their frustrations, and then refuel for the next day, week, year.

My mom made it to the end of her career and she never lost her compassion. She surely tested my dad's patience as the release valve, however. I remember it like yesterday.

I am convinced these energy exchanges are something to consider on a national level. The US is noted around the world as a very generous and very compassionate people. This reputation was no doubt built up over the entire 20th Century. Since the mid to late 80's this pool of compassionate energy has been attacked unsparingly by new, capitalistic agendas that we absolutely must defend against.

It was very very important that the nation voted in Obama and that an important part of his platform was shoring up the safety net.

The Democratic reaction to union busting in Wisconsin was equally important.

If Libertarians and Free Market capitalists win this war, the nation is doomed to be a banana republic.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I was born in Toronto and then adopted and grew up in Detroit. I moved to Florida and lived there for 12 years. We moved from the states in 2007 and since we are married in Canada, my hubby is covered and will become a citizen next month. Our combined monthly drug co-pays are around $150 each month. Other than the cost sharing, regarding drugs, there are no other costs, unless you want non-emergency services in a hurry and then you may have to pay something. Basic health care, drugs and emergency services are there for everyone, being a citizen or a legal resident is the only requirement for being covered.

Sounds very civilized. Maybe someday the US will come to it's senses and emulate that model.

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"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

Sounds very civilized. Maybe someday the US will come to it's senses and emulate that model.

One aspect to consider is the sheer scope of Universal Coverage in the states. You have about 280 million people to our 33 million. American health care was built to make a profit, not so much in Canada. The real hurdle in reforming health care is to decide what to keep and then find ways to eliminate waste, etc., while providing an improved level of care. We do wait for tests, that are not considered routine or necessary per se, so I have to wait a year for a prostrate exam, but it's still in the recommended time frame and it will not cost me anything. If I needed one sooner, I could get it, still included, but the idea is you have the people who need the services right now, use them first and they fit the rest of us in, when there is space.